[tri-med] Re: feeding tube question from a former list member

Loren how is  Mimi and her family doing?  I really hope all goes well.  re:
the G-tube it really was the best thing we ever did. Rebecca had an NG tube
from the start so adequate nutrition was not a problem it was more the
difficulty and nucience. Initially she had a bard g-tube that was more like
a Foley as at the time ( 12 yrs ago) mic-Key's were not covered here.
Rebecca has never pulled her tube out, she does play with the tubing but she
seems to know that it would hurt if she pulled it out

Susan mom to Rebecca t18 m

-----Original Message-----
From: tri-med-bounce@xxxxxxxxxxxxx [mailto:tri-med-bounce@xxxxxxxxxxxxx] On
Behalf Of Gary Comparetto
Sent: Friday, October 28, 2005 11:26 PM
To: tri-med@xxxxxxxxxxxxx
Subject: [tri-med] Re: feeding tube question from a former list member

Hi,
Stephen had a MIC-KEY* Low-Profile Gastrostomy Feeding Tube put in last
March and is doing fine with it.  I've copied a URL below that has a good
picture of what it looks like.  It sticks out about 3/4 inch - so far,
Stephen hasn't pulled at it - we generally keep it covered with his shirt.

Feel free to have Mimi e-mail me off line if she'd like more info or would
like my phone number to discuss this further.

Thanks
Gary (and Elizabeth) parents of Daniel (16), Michael (14), Joshua (12),
Rachel (10), John (8), Nathan (6), Esther (4) and Stephen (1) (T13 Mosaic
born 10/5/04)

Loren Warnemuende wrote:

> Hi all!
>
> I'm sure many of you remember Mimi and her daughter Tierney (T18) who
> were on the list a year or so ago.  They had to take time off due to
> extra stresses (Mimi's son Keegan was diagnosed with leukemia).
> Anyway, I just got this email from her and thought I'd pass it on to
> you.  I'll forward any responses to the list on to Mimi.
>
> (Brief family update:  Keegan is trucking along--I believe he's in
> remission right now, but it's one of those things they have to keep
> watching.  Tierney is 2 1/2 now and just beautiful!  The rest of the
> family is well, but they were all displaced over the summer as major
> construction was going on down the street from their house, and they
> were concerned about Keegan lowered immune system.  They hope to be
> back in their home by December.)
>
> Here's the note:
>
> Begin forwarded message:
> > Date: Wed Oct 26, 2005  2:59:30 PM America/Detroit
> > Subject: feeding tube
> >
> > Hi Loren,
> >
> > Hope you, Kraig and the kids are doing well. In spite of the drought,
> > we are having a colorful Fall.
> >
> > We are doing alright here. Can NOT wait to get back in to our house.
> >
> > Tierney is doing fine but I am, at long last, going forward with a G
> > tube for her.  She is not gaining weight, in spite of the fact that I
> > spend over 4 hours a day feeding her. She loses ground when she is
> > sick--the stress of getting food in to her her is just so high. I am
> > still pumping breastmilk for her and I have lately been trying to
> > transition her on to some pediasure mixed with my breastmilk. She is
> > very resistant, and I am just not sure how long I can go on pumping
> > for 2 hours a day to meet her needs. Honestly, I am not--she is
> > gaining and losing the same ounce month after month.
> >
> > Long story short, I was hoping you or perhaps someone on the list
> > could give me the lowdown on feeding tube options so I can go in
> > educated. I have heard that the Mickey is low profile and pretty easy
> > to use. Tierney is active and opinionated enough that I think she will
> > pull at something that sticks up much.
> >
> > I have some experience with G tubes as I place them in dogs and
> > cats--but ours are designed to be temporary and somewhat cumbersome to
> > use.
> >
> > Also--what tests did Keren have to have done prior to her G tube
> > placement? I hate tests.
> >
> > Thanks a million Loren. This has been a long time coming and I am
> > anxious to make Tierney's feedings more successful and less stressful.
> >
> > Love, Mimi
> >
>
> Loren (wife to Kraig, mom to Keren Elyse, T18, 3 years old! (9/27/02),
> and Clarissa Joanne (7/17/05) )
> Southeast Michigan
> http://webpages.eng.wayne.edu/~ad6075
>
>                   Building ___ooOOoo__ Rainbows
>                        www.trisomyonline.org
>                   Families Helping Families On-line


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-- Desc: Card for Gary Comparetto


                  Building ___ooOOoo__ Rainbows
                       www.trisomyonline.org
                  Families Helping Families On-line


                  Building ___ooOOoo__ Rainbows
                       www.trisomyonline.org
                  Families Helping Families On-line

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